The Global Retinoblastoma Study Group

The Global Retinoblastoma Study Group (GRSG), founded by Professor Didi Fabian, brings together experts from over 150 countries and more than 450 centres worldwide.

The GRSG has published several major pieces of research, revealing that:

• Children in low-income countries with the disease are 16 times more likely to die from it compared to those in high-income countries within 3 years of diagnosis

The study looked at survival data from an estimated 50% of all new cases worldwide in 2017, finding that over two-fifths of children die within three years of diagnosis in low-income countries, compared with fewer than one in 100 in high-income countries

• 50% of children in low-income countries present to doctors with a tumour that has spread outside of the front of the eye, compared to fewer than 2% in high-income countries

• There is no association between theorised causes of Rb including smoking, breastfeeding, maternal age and birth order

• Nearly a quarter of children diagnosed with rare eye cancer in Africa die within one year

The GRSG centres are currently submitting their 2024 data, which will assess patients presenting in 2024 and their outcomes in 2027, providing multiple sub-analyses and a comprehensive update to the 2017 figures.

Publications

Kaliki S, Vempuluru VS, Fabian ID, et al. Retinoblastoma with and without Extraocular Tumor Extension: A Global Comparative Study of 3435 Patients. Ophthalmology Science. October 2024. https://doi.org/10.1016/j.xops.2024.100637

Nishath T, Stacey AW, Steinberg D, et al. Retinoblastoma survival and enucleation outcomes in 41 countries from the African continent. British Journal of Ophthalmology. August 2024. https://doi.org/10.1136/bjo-2023-324746

Fabian ID, Abdallah E, Abdullahi SU, Abdulqader RA, Abdulrahaman AA, Abouelnaga S, et al. The Global Retinoblastoma Outcome Study: a prospective, cluster-based analysis of 4064 patients from 149 countries. The Lancet Global Health. August 2022. https://doi.org/10.1016/S2214-109X(22)00250-9

Global Retinoblastoma Study Group, Fabian ID, Abdallah E, Abdullahi SU, Abdulqader RA, Adamou Boubacar S, et al. Global retinoblastoma presentation and analysis by national income level. JAMA Oncol. May 2020. https://doi.org/10.1001/jamaoncol.2019.6716